Legislation Seeks to Better Protect Privacy of Genetic Data; Discussed in Assembly Committee on Monday

(TRENTON) – Seeking to safeguard consumer privacy, Assembly Democrats Roy Freiman, Andrew Zwicker and Annette Quijano introduced legislation to make a DNA sample sent for testing and analysis the exclusive property of the individual sampled. The bill (A-1170) was put up for discussion during the Assembly Law and Public Safety Committee meeting on Monday.

“Direct-to-consumer DNA testing kits gained tremendous popularity over the years with more than 12 million Americans paying to send their DNA for analysis,” said Freiman (D-Somerset, Mercer, Middlesex, Hunterdon). “The surge came after the marketing from these genetic testing companies claimed people could learn more about their heritage and genetic predisposition for disease with simple spit-in-tube and mouth swab tests.

“Now we have millions of logged DNA samples remaining in the hands of companies without clear regulation dictating disposal or consumer permission to use their DNA sample for research purposes.”

As momentum of the industry slowed with the consumer base for at-home DNA testing kits shrinking, genetic testing companies like 23andMe and began selling genetic data to pharmaceutical companies, academic groups and other third-party entities.

The bill would require consent from individuals whose DNA is being sampled and analyzed in order for that sample along with any genetic information retrieved to be used in any way.

“Companies have found a way to commoditize personal information and that is an affront to both our autonomy and privacy,” said Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon). “While most genetic testing companies have policies requiring consent, the details of how your data can be used and where it can end up often gets lost in the fine print. Making genetic data the outright property of the person sampled ensures it’s always a case of opting-in.”

A number of studies have concluded that despite genetic data being anonymized and aggregated, it is still possible to trace it back to the individual and identify relatives.

“Genetic data sharing can be tremendously valuable when it comes to the development of new drugs and treatments for genetic diseases, but consumers must have the power to control who can and cannot use their data,” said Quijano (D-Union). “Under this bill, we would be encouraging better privacy standards to ensure companies are more responsible with consumer data.”

The bill was introduced on January 14, 2020.